The care services and support provided to residents during the end of life and post death phase is one of the most important and therefore promotes the application of a set of standards that is indicative of:

• The early identification of resident “End of Life Care” needs, treatment preferences, wishes, choices and goals.
• Support for the whole system/ holistic approach to how services are provided.
• Person Centred Care that stresses the importance of providing care that is reflective of the preferences, choices, rights, values, dignity, privacy, cultural and spiritual beliefs of the resident.
• Emphasis placed on the importance of staff understanding of Palliative and End of Life including End of Life care for those residents living with dementia.
• Facilitating Access to Specialist Palliative Care Advice and support as and when required.
• Delivery of evidence based care which is supported by the input of responsive and competent staff.
• Appreciation of the view that End of Life Care does not cease at the point of death but includes prompt Verification of death, Care of the resident’s body and Post Death Support of family and friends.

Terminology:

End of Life – “Care that helps all those with advanced, progressive, incurable illness to live as well as possible until they die” (National Council for Palliative Care). The timespan this covers may be one year or more or it may refer to a few weeks.

Palliative Care – is defined by the World Health Organisation as an approach which:

• Provides relief from pain and other distressing symptoms
• Affirms life and regards dying as a normal process
• Intends neither to hasten or postpone death
• Integrates the psychological and spiritual aspects of patient care
• Offers a support system to help residents live as actively as possible until death
• Offers a support system to help the family cope during the residents illness and in their own bereavement
• Uses a team approach to address the needs of residents and their families, including bereavement counselling, if needed
• Will enhance quality of life and may also positively influence the course of illness
• Is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Verification of Death – is defined as the formal confirmation, by a competent person that the resident has died. In the event of an expected death this may be a competent nurse. In the event of an unexpected death this will always be a doctor. You have to check your home policy as I know homes that doesn’t matter if is expected death or unexpected death, a doctor must come to verify/ certify the death.

Certification of Death – this must be completed by a doctor at all times and involves the issue of the death certificate stating the cause of death.

Expected Death – occurs when it has been predicted that the patient will die due to the effects of a medical condition that is life limiting and where no active treatment to prolong life is prescribed. In this circumstances it would be expected that this has been communicated to all relevant persons and a valid Do Not Attempt Cardiopulmonary Resuscitation (DNARCPR) is on file.

Unexpected Death – occurs when death has not been predicted.

Advanced Care Plan (ACP) – written statement expressing treatment preferences and choices and preferences of care at the end of a resident’s life.

Advanced Decision to Refuse Treatment (ADRT) – is a legally binding agreement which will be signed by a person whilst they retained capacity detailing specific intervention that they are choosing in advance to refuse.

Lasting Power Of Attorney (LPA) – an LPA allows a resident who is aged 18 and above to appoint a person to act on their behalf once they have lost capacity to make these decisions for themselves. LPA appointees may be appointed to act on the resident’s behalf for either specific documented finance and property matters and/or for specific documented health and welfare matters. Decisions made by an LPA for Health and Welfare are required to be judged as being in the resident’s best interest and not motivated by the desire to bring about the resident’s death. LPA’s are only valid if held on file and stamped as having been activated.

Assessment & Identification of End of Life Care Needs

All residents whether they be diagnosed with EOL condition or not will be provided with the opportunity to voluntarily discuss their end of life wishes and choices and with their consent for these to be documented within Advanced Care Plan (ACP) and/ or End of Life (EOL) Care Plan. This should take place as part of the initial move in assessment process.

All Residents will receive a full holistic assessment of their needs and for this assessment to be repeated when assessed as entering the last few weeks or days of their life.

Staff will as parts of the assessment process identify any resident needs which require specialist advice or input. This may be from a range of sources such as:

• Palliative Care Teams
• Local Hospice
• GP
• Medical Consultant
• Macmillan Nurses
• Tissue Viability Nurses
• Pain Management Service

Advanced Care Plan (ACP) – consider to include the following points when writing this care plan:

• Personal value and beliefs
• Personal goals
• The resident’s understanding of their diagnosis and prognosis and preferences for care and treatment
• The resident’s preference as to where their care at the EOL is to be provided (hospital, hospice or in the home)
• EOL preference regarding the visits from persons important to the resident as church minister/ Rabbi/ other religious Service
• Choice of Funeral Director
• Choice as to whether the resident wishes to be buried or cremated
• Specific religious rituals
• Preferences for certain medical treatments albeit these decision are ultimately dictated by the resident clinical care

The dying process is unique to each person but in most cases, there are common characteristics or changes which help to indicate that a person is dying.

The many changes which indicate that life is coming to an end fall into three categories:

• Diminished need for food and fluids – as weakness develops, the effort of eating and drinking may have become too much and at this time help with feeding might be necessary.
• Withdrawing from the world – is a gradual process. The person will spend more time sleeping and will often be drowsy when awake. This apparent lack of interest in one’s surrounding is part of a natural process which may be accompanied by feelings of tranquility.
• Changes in breathing – as the body becomes less active the demand for oxygen is reduced to a minimum.

Occasionally in the last hours of life there can be a noisy rattle to the breathing. This is due to a build-up of mucus in the chest, which the person is no longer able to cough up.

If the person is breathing through the mouth, the lips and mouth become dry. Moistening the mouth with a damp sponge and applying lip salve will give comfort.

When death is very close the breathing pattern may change again. Sometimes there are long pauses between breaths, or the abdominal muscle will take over the work – the abdomen rises and falls instead of the chest.